So sick today. Can't get off the couch. Need help just to get to the bathroom. But everyone's out and enjoying the day. I'm just stuck here. Yes, I'm sad and in pain and almost completely incapacitated. No, I don't need sympathy or pity. I'm having enough of a pity party on my own, for today. I need surgery so badly. My body is failing. I really need to be fixed. This is not fair.

And please don't tell me to cheer up. That doesn't actually help anything. Sometimes you can just let someone recognize the unfairness of their situation and feel justifiably sad and angry about it. Sometimes, that's the best thing a real friend can do.

New/Worsening Symptoms

I'd like to apologize in advance. I am extraordinarily tired, but I will try my best to write coherently.

Yesterday, Gus and I went to his cousin's wedding, an hour and a half away. It was quite a challenging day for me, and really showed the new symptoms I'm developing. I used my wheelchair and my Aspen collar the whole day to try to help me last as long as possible.

First, I took my pills in the morning, as I always do. Unfortunately, as has been happening lately, I had a lot of trouble getting them down. Already, I have to arch my back, pull my head back, and lower my chin to my chest to get big pills down. (I don't take any huge horse pills.) Even while doing all of these things, I have been having trouble swallowing pills. Sometimes, they come back up, sometimes they kind of go back and forth, and now, sometimes I actually gag and vomit several pills back up. I drink copious amounts of water in between pills. It seems that now, I have to add a little bit of food in between to encourage the pills to go down, in addition to the large amounts of water I drink.

Next, at the wedding ceremony itself, I had one of my new "sleeping" spells. I became extraordinarily tired, and basically fell asleep. The only difference, I could still hear what people were saying. I just didn't have the ability to react. Gus discovered a neat little trick. He guessed that I could hear them talking about me, and asked me to move a finger if he was correct. I didn't know if I could, but he was right. I could move a finger! So, we've developed a new way of dealing with this, which is choosing one finger to mean yes and another to mean no. This way, I can still communicate a little while I'm "sleeping". The only question is, how to deal with these spells. Salt pills don't seem to be the answer anymore. Yesterday, I think the Provigil helped, followed by a lot of water to get the Provigil working sooner.

After the Provigil kicked in, I started trying to wake myself up by squeezing my hands and feet, trying to pump the blood back to my brain. The best thing was when Gus squeezed my legs, which were not circulating much blood, based on how cold they were. He just kept squeezing them, pretty forcefully. I had decreased sensation in my legs. He thought he was hurting me, but I could barely even feel it. After a couple minutes, this really seemed to help send the blood back to my brain. I know that there are support hose for this, but in the heat, I promise that overheating causes just as much stress.

After the ceremony, we were the last ones to leave. We made it out to the car, where I was able to rest in the back seat for a bit. Then, we went with Gus' sisters and nephew to Subway, where I was able to eat and take more meds. I was feeling pretty well at this point, compared to the rest of the day.

So we went to the reception, expecting to be able to stay an hour or two. Unfortunately, there was another problem. The band, which included multiple horns, were all using microphones, amplifying the sound to a completely intolerable level. Of course, I did my very best to be polite and ignore it. Unfortunately, my brain just couldn't take it. I started having a very interesting reaction. The upper half of my body starting convulsing. After I couldn't control it anymore, I begged Gus to get me out of there. We found a couch in the hall, where I let the convulsions go for a couple minutes, without trying to stop them. I've had this reaction a few times before, but never this severe. I certainly never deal well with too much noise or lights or activity. I have the same reaction to being startled, too. I'm not sure the name for it, but I know that it is an autonomic reaction to the brain being overwhelmed. It's not a real seizure, but similar. After I stopped convulsing, I was completed exhausted and hypersensitive. Even the flash of a camera felt like an attack. My whole body felt like it was being attacked. My nerves were on edge. At that point, we gave up on the rest of the night, because we knew the music would last throughout the evening.

We drove home, a little frustrated with my failing body. I was completely exhausted and zoned out for the rest of the night. I slept fine last night, but I'm still exhausted now.

I'm glad we were able to go to most of the day, but as always, I feel guilty for causing problems.

I find that these symptoms are really hard for people to understand. When the symptom is a headache or nausea, everyone can relate, because they've all experienced it at some point. When the symptom is falling partially asleep or going into convulsions, but not having a real seizure, it's a lot harder to explain. The easiest thing is to say that the "sleeping" spells are similar to narcolepsy, and the convulsions are similar to a seizure.

Today, I will be resting until it's time for the piano recital. I will have to find a way to be awake/alert for that time. Then, it's a week off!!! I'm so glad I gave myself this week off. My body is truly exhausted. The real problem is, after a week off, how will I ever convince myself to return to work?

I have gotten started on getting all of the necessary pieces together for Dr. Menezes. I'm still very torn about whether or not I could let another doctor operate on me. But, I'm at least going to get his opinion, if he's willing to see me.

Ice picks

So, last night, I was easily exhausted, and fell asleep quickly (that's not usually my problem). I awoke at 3:30, which wasn't unexpected, as this happens quite often these days (4 nights in a row now). Of course, my Ambien CR is still in the process of being approved. But I'm scared to take it every night and become dependent. Anyway, I woke up with another ice pick headache. It feels just how I imagine a trans-orbital lobotomy would feel (you know, the kind where they stuck an ice pick right over someone's eye and shifted it from side to side). Anyway, this time it was my right eye. Even when I got into a position with traction that lessened the pain, I was unable to fall back to sleep, as my mind was racing. It now takes two .5 doses of Klonopin to let me fall back to sleep (another example of building up a tolerance). Last night, it took the addition of a Vicodin to allow me to sleep. Hopefully the Ambien will help me solve this problem (although it only seems to allow me to sleep from 10:30 PM until 5:30 AM, which just isn't close to enough sleep for me).

So, even though I still have the ice pick headache, I've got some things to get done. My friend, Juan, has inspired me to gather the necessary paperwork/medical information needed to send to Dr. Menezes. I don't have any idea if I would actually have surgery done by a different doctor, but I hope to see him so I have every possibility available to me. It will also be nice to get a new perspective on my situation.

So, my job is to get:
*Copies of X-rays and MRI's done last year
*Copy of surgical reports from NY
*Referal from Dr. Shah to see Dr. Menezes
*Written history of symtpoms/surgeries

Lots of work to do. We'll see what I can get done before the holiday weekend.

still painfully tired

So, I added a B Complex vitamin to my list of pills, but it definitely doesn't affect my energy level. I was in a state of sleep paralysis most of the day. I describe it this way, because I am technically aware of my surroundings and my brain is awake, but my body is so tired that I am essentially asleep. I certainly appear asleep. I only wish I could be asleep. But I suppose the Provigil keeps me from actually sleeping. I'm definitely raising the Provigil dose tomorrow. If I take more with my breakfast pills, maybe I will be able to actually function normally during the day. I went to work today, during the small window of time when I had the most Provigil in my system. Without it, I would be completely bedridden again. I've tried skipping Provigil to get some actual sleep, and I truly do remain bedridden for the entire day.

So very tired. Time to sleep again. Haha. Like it does any good. I'll wake up just as tired as I am right now.

I still have all my other symptoms. My head is killing me. But the lethargy is the most limiting symptom right now.

I'm not a fun person to be around right now. It's kinda like being with a person who is sleeping. When a person is sleeping, he/she is not very happy to be bothered in any way. Any touch or sound just annoys the sleeping person. That's how my body is all day long, since I am essentially sleeping. It actually hurts to move, hurts to be touched, and hurts to be talked to. So clearly, I am not the best version of myself right now. Everything seems to bother me. I'm sorry to those that have to interact with me. I'm trying my best.

Still have no idea when I'll be eligible for surgery. I know it's not going to be a quick fix, but I'm ready to get started. This is so frustrating. The libelous journalism about my doctors continues. I'm just ignoring it now. I assume I will still have surgery with The Chiari Institute, when the time comes. Boy, this patience thing really is a challenge.

Still so tired

So, I made it through the weekend, I guess. The recital yesterday went well, even though I was mostly brain-dead the whole time. The fatigue and brain fog has not left me. On Saturday, Gus and I went to a barbecue to celebrate the end of the school year. After 2 hours of sitting down outside, we went inside, and as soon as there was a couch, my body shut down. I didn't fall asleep exactly. I was still aware of my surroundings. But I was mostly paralyzed and very out of it. I would call these low-blood pressure spells, as I have in the past, but they are a bit different, because salt and water don't seem to help. Instead, I seem to need to just stay "asleep" for some time. Most likely, this is a symptom of low oxygen in the brain. I may benefit from oxygen at times like this, but I don't think I'll ever find out, since my O2 stats measured on the finger don't seem to drop too low. Unfortunately, I know that for people like me, the brain can be deprived of oxygen, even if an O2 stat monitor doesn't recognize it. I would like to try oxygen, to see if it would help. On the other hand, nothing beats lying horizontally and allowing the body to rest at times. It's just that this brain fog and extreme fatigue have been with me for at least a week.

Today is another work day. Hopefully, the Provigil will help me again with some artificial energy. Thank you to medical science for finding ways to keep this sick body going.

Not just tired

Despite taking extra salt and Provigil, I have suffered from excessive sleepiness all day. I have fallen asleep multiple times, just briefly, while upright. I also have had temporary paralysis. I can't stop yawning and my eyes keep tearing. I am profoundly tired, but not actually asleep. I feel like if I could fall asleep, I may finally feel rested. I may not be getting recuperative sleep during the night. I may be in a semi-conscious spell, but salt hasn't helped. I'm in such a haze. Maybe my next doses of meds will help. Maybe exhaustion is setting in due to overdoing it due to hypomania this past week. Good night.

Last Post about the TCI controversy (I hope)

I just want to post my last thoughts, to be sure that a few things are clear.

There was no abandonment by the two neurosurgeons.
1: That the patient came to have surgery on a day when Dr. Bolognese requested an emergency leave was a scheduling mistake by the hospital. 2: Standard OR safety protocol was not followed. No patient is to be put under anesthesia if the surgeon is not present or available. 3: Dr. Milhorat did not have consent to operate. He could do nothing. 4: The hospital is smearing the reputation of these 2 doctors to protect its own public image and hide its own negligence.

Clearly, the investigation is ongoing, so the facts are difficult to obtain. But all of these things should be evident.

There was no wrongdoing on the part of the doctors. The only thing Dr. Bolognese could have done was spoken directly to the patient about his emergency leave. However, he had a family crisis going on, so he probably had many other things on his mind.

Keep in mind that the surgery did happen 3 weeks later, and the patient is already feeling much better! She still trusted her doctors to open her head. She was just hurt by the situation, which is understandable.

THE BEST NEWS: Dr. Bolognese has been reinstated!!! He will be back to saving lives on Monday. Hope has been restored for many across the world. It is so sad that both doctors' reputations were smeared in this ridiculous media circus. It is even sadder that Dr. Milhorat had to retire under a cloud of suspicion. However, he was planning on stepping down from his operating responsibilities this year, anyway. More importantly, his research with The Chiari Institute will continue, probably for the rest of his life. He has dedicated his professional life to exposing this disease and learning all of its intricacies. He has changed so many lives.

Both of these doctors sacrifice most of their lives for their patients. Most days, they perform two long and complex surgeries. Dr. Bolognese follows this up with consultations that last into the evening. He finds a way to make his rounds, visiting his post-op patients every day. Then, when he gets home, he responds to emails from his patients, sometimes into the early morning hours. Then, he sleeps a few hours and starts all over again. Both of these doctors have sacrificed time with their families and any type of private, relaxing, or fun life. Instead, they work. They work and work to find the answers that Chiari patients are desperately seeking. I thank them for their unfathomable dedication.

I hope not to inspire any rude comments from people who disagree with my thoughts. I certainly do not wish to offend anyone. But I do understand that this is a very sensitive topic for some. Nonetheless, I will simply delete any such comments before they are even published.